Status update and Travel/taper question.

[Hindags]

Status update and travel question.

I was in a bit of a quandri last weekend trying to figure out how to handle the 7-6mg 38 day taper. I was experiencing more aches and pains, likely exercise induced, but potentially PMR induced. I take delayed release Pred at night. I followed your suggestions and stayed at 7 another night and the next day found myself well enough to go to 6mg the following night and get back on the taper pattern.

I am more tired on a regular basis, my right shoulder/upper arm area is more achy/burny, and my thighs a bit more achy/burny. I'm assuming this is just what the journey feels like at this point. I'm not really very uncomfortable and have not stiffened up.

Travel question. I'm at day 16 now, expecting to do 6mg tonight and again on Weds. . At this stage of the taper the balance shifts from primarily 7mg towards primarily 6mg. I'm scheduled to fly to San Diego from San Francisco next Friday to spend the weekend with my cousin. No time zone change. Traveling alone with handicap assistance arranged. I return next Monday. This will not be a very active or stressful journey. Everyone will be moving slowly for one reason or another.

As luck would have it I'm supposed to do two 6mg nights in a row next weekend.

Should I try to keep to this pattern and adjust if I don't feel well?

Or should I just stay at 7 after Wednesday and only go to 6mg after I get home, on Monday night, depending on how I'm feeling of course.

I'm a bit afraid that if I break the pattern too much I'll have to start easing into 6mg all over again. I don't know if this is an irrational concern based on a misinterpretation of the reason for the taper pattern.

I think of the taper as doing two things:

1) identifying more accurately the lowest dosage that I'm comfortable on given my stage of PMR. (PMR symptoms)

2) slowly easing into a lower dosage so that the body tolerates the lower dose better and doesn't complain too much (steroid withdrawal symptoms)

3) added thanks to PMRpro----give the adrenals warning and time to catch up with the decrease in Pred so they can wake up and regulate themselves.

Advice and suggestions most welcome.

[SheffieldJane]

Your taper sounds well thought through. You seem to have made up your mind to continue with the pattern unless you feel unusually unwell. You have taken the precaution of having airport assistance and you don’t expect the weekend to be strenuous. I understand the concern about losing the ground you have made up in your taper towards 6 mgs. I am at the same stage as you and I think I would press on whilst being ready to be flexible if anything unforeseen happened. Good luck and have a lovely time.

[PMRpro Ambassador]

I wouldn't be trying very hard to reduce if travelling at this stage - you have 2 points but there is a third: below about 8mg your body has to start making cortisol, the body's natural corticosteroid, which it didn't have to do above that dose. This is a very complex performance with a lot of difference components to settle down again.

Just repeat the week again and then carry on when you get back.

[Hindags in reply to PMRpro]

Thank you.

I think you mean to repeat days 13-19 of the taper, corresponding to Thurs 2/22 through Weds 2/28. 7.7.7.6.7.7.6. That makes sense, only one day at 6 while I'm gone. If at any time things do not feel right stay at 7 all through, or go up to 8 for a few days as needed???

I am definitely feeling the cortisol gap.

[Mrs-CJ in reply to Hindags]

Hi Hindags

I have your situation a time or two during the year visiting relatives. Although the visit shouldn’t cause extra stress, for me it always ends up requiring the use of “more spoons” to get through the day.....visiting more, bedtime and rising a bit different times, food and eating changes, etc.

I think what you said above are all good options and I do the same ones as needed. First I try to stay with my reduction but at the first inkling of symptoms or stress I just repeat the DSNS step I am on. If that doesn’t work I add in a day or two or three of a higher dose, and then go back to the repeated step level. These things usually get me through it. Oh, and as soon as I am home I clear the decks and have a few days of as much rest as I can get.....a good book and some hot tea are my favorites!

[PMRpro Ambassador in reply to Hindags]

Yes probably, I never know how the various approaches work excep the DSNS! Just don't add extra new dose days...

[DorsetLady PMRGCAuk volunteer]

Hi Hi dawgs ,(sorry 2where did that come from! ! Predictive text!!!!)

Personally I would stay at 7mg until you get back home. For the sake of a week or so why rock the boat, and chance setting yourself back.

Okay you’ve got SA sorted etc, but any travelling has some stress, and you want to feel good and enjoy the time with your cousin.

A week here or there in the great scheme of things is nothing.

Enjoy.

[GOOD_GRIEF]

If it was me, I'd stand pat and wait for a week after I got home to proceed with a reduction. I'd rather take the extra week or two to go lower than risk a flare.

You've got to remember that not only is travel a phyical stress in and of itself without PMR, but pred makes us more likely to pick up viruses in the environment, and travel carries a higher risk of exposure to unfamiliar viruses than our normal routines.

A flare would send you way back up the scales only to tred all those weeks again. I'd stay on the same pattern as last week, repeat it next week, and even tweak it with an extra mg if needed. But that's me. Having fallen into a crippling flare that lasted 3+ months after too quick a reduction, I learned my lesson. Had I listened to my body insead of my doctor, I'd likely be a lot lower now than I am.

Your body will tell you what to do if you pay attention.

Enjoy your trip.

[Hindags in reply to GOOD_GRIEF]

I will be traveling with a face mask and hand sanitizer. I will wear the mask in the airport and on the plane as much as is tolerable. It's not a long flight. I will use the sanitizer liberally.

At my work office I've had menthol cough and hand sanitizer on the table for several months now next to the usual box of tissues. One week several clients came in obviously sick. I think they've taken the hint. Now they call and I bless them for staying home and taking care of themselves.

[Sandy1947 in reply to Hindags]

I love your subtle clues to the clients! We can not afford to get sick with our illness. I hated the flight from SC to NY because of the germ fest! Luckily, there was an empty seat next to me on both flights!

My granddaughter, (18 months) always has a runny nose. She probably gets it from her 3 yr. old brother. Can’t help kissing them and hope for the best!